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FARAFARA Cure FA

Meet the Community

You are not alone. The entire FA community, also known as the FAmily, is taking this journey with you. Meet a few of our dynamic people with FA below.  New Meet the Community interviews are posted every Monday, so be sure to visit often.  Please e-mail info@curefa.org if you would like to be interviewed for a Meet the Community post.
 

FARA Ambassadors

The FARA Ambassadors are a group of people living with FA who are committed to supporting FARA in the search for a treatment and cure. They represent the community by speaking at events, meeting pharmaceutical partners, giving media interviews, and more.

Meet the FAmily!


Carly Magnuson

Carly M2Name: Carly Magnuson

Age: 27

Where do you call home? Sunny South Florida

What is a current goal you have with your education? I graduated from Deerfield Beach high in 2009. I didn't feel the need to go to college
until now, as I am completing early childcare online courses so I can get a job at my mom's day-school. I am interested in taking more online
classes

What is your relationship status? Do you have children? No children of my own, but I have three handsome nephews and a niece on
the way. I live with my parents and younger sister and 2 dogs and a cat.

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David Willis

DavidWillis1Name: David Willis

Age: 41

Where do you call home? Manchester, Connecticut

Education (degree(s): Bachelor of Science – Occupational Safety and Health; Associate of Science – Treatment/Prevention of Alcohol and Chemical Dependency.

What is your relationship status? Do you have children? Single/Divorced with an 8-year-old son. Currently live alone in a single-story ranch.

What's a typical day for you? Since college graduation in 1999, I have worked for United HealthCare in many different capacities. In October 2017 my employer had mass layoffs which I was a part of. My typical day has changed drastically over the past 6 months. I currently spend my days trying to gain employment!

How long have you known you are living with FA? I have late on-set FA. I was in my late twenties when I began having balance problems and in my early thirties when speech difficulties began. It took countless doctors and about five years to get a confirmed diagnosis of FA. I was officially diagnosed in 2010.

Are there any others with FA in your family? None.

Describe your transition from walking to walker/wheelchair. In the beginning I tried hard to fight it. I would rely on walls, furniture, or whatever I could grab onto to stay upright. I shortly there after began using a cane (which didn’t help much but would reduce the speculation of onlookers regarding my sobriety). I currently have a few rollators in my house and use a Travelscoot (light weight scooter) if I leave the house. 

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Elizabeth Bowen

ElizabethBowen1Name: Elizabeth Bowen

Age: 34

Where do you call home? Hilton Head Island, South Carolina, born and raised.

Education: I have attended some college. I used to think it was very important to obtain a degree. But now I feel like as long as I can continue to learn new things, I’m good. I very much hope to write a book sometime in the future.

Who do you live with? I am divorced and have two children. I live with my parents and two out of three of my younger brothers. I am currently in a deeply committed relationship with my cat.

What's a typical day for you? I don’t exactly have typical days. Sometimes I have appointments, head to the gym, maybe I’m doing volunteer work, or maybe I’m spending time with my mom, painting and watching TV.

How long have you known you are living with FA? When I was 12 years old, I went to get a physical from the doctor in order to play basketball for my school and he diagnosed me with scoliosis. I began seeing an orthopedist to treat my curved spine and he believed that I might be suffering from another condition, ordering a DNA test. When I was 14 years old, I was diagnosed with FA. 

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The Miller Family

Miller Family 1 

Name: Sean and Ryan Miller

Age: Sean (8), Ryan (6)

Where do you call home? Denver, Colorado

Education: Sean (3rd), Ryan (Kindergarten)

Who do the boys live with? They live with their parents and 2 older siblings.

What's a typical day for you? A typical day involves getting ready for school, going to school, playing with friends, playing video games and watching some YouTube.

How long have you known Sean & Ryan are living with FA? Sean was misdiagnosed with CMT at the age of 4. There was something always off with his gait and he fell more than other children his age. It wasn't until we had an abnormal EKG and discovered cardiomyopathy, that the cardiologists suggested FA instead of CMT. We had a blood test done and it was confirmed when Sean was 5.

Ryan doesn't show symptoms (only notice minor balance issues, but would not know unless you know about FA). We wanted to get him tested for FA, because we just wanted to know. Ryan also tested positive for FA when he was 5.

Are there any others with FA in your family? No one else besides Sean and Ryan that we know of.

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Beverlee Blackston

Name: Beverlee BlackstonBeverleeBlackston1

Age: 30

Where do you call home? Paducah, Kentucky

Education (degree(s): Associate's Degree in Arts and Bachelor's Degree in Communications and Theater

What is your relationship status? Do you have children? I'm married and have a 3 year old daughter, Freya. I've been married for 7 years.

What's a typical day for you? I wake up around 7:30 when my daughter wakes me up. We watch cartoons and play with her toys until naptime. When she takes a nap I do my Yoga practice and meditate, sometimes I write or practice my divination with Runes or Tarot Cards. When Freya wakes up we have dinner and play until bedtime. When the weather is nice we spend a lot of time outside on our farm.

How long have you known you are living with FA? It's been 10 years since I was diagnosed. December 2007 was when I found out. My husband noticed that something was off so he told me I should go to the doctor. It took awhile, but they finally figured it out.

Are there any others with FA in your family? I'm the only person on both sides of my family that has FA. 

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